I posted this a little while back... (in a different thread, got no reply). well, now I'm in the same boat again.

"Today I basically slept all day. I went to bed at eleven last night, slept ten hours, got up for breakfast, slept for an hour or so, watched some TV, ate a tiny lunch, slept a few more hours, and then ended up sleeping from one pm to six pm (which is now). I'm tired enough to go back to sleep right now prolly, but I'm going to eat something first at least, and feed the poor dog.

Basically since I got up this morning I've been asleep more than I've been awake. My head feels funny. I don't have a fever or anything like that. Is this from gluten? I'm a pretty lazy person but not this freakin' lazy."

This time I slept nine hours last night, got up to eat brunch and watch TV, then slept about 2+ hours. My head feels funny and I could totally fall asleep again. My body is screaming at me to but I'm going to wait as long as I can and try to sleep at night instead.

I've been really careful about CC and food etc... not too much processed food, just bread from a local totally gluten-free bakery for PBJ sandwiches, or maybe rice chex for breakfast. I've tried to get better about washing my hands before meals. Maybe now I need to clean the crumb-filled kitchen from top to bottom? Idk.

How do you handle sleep episodes like this where you feel headachy and sick and can't get anything worthwhile done? luckily I'm not employed atm, but I mean to be soon.

I've dealt with extreme sleepiness before but that was when I was actually out and about doing things, not just sitting around eating and watching TV and then sleeping. I can't handle this; I want it to stop TT_TT I feel like a failure at life

there was a time when I first moved here that I fell asleep then woke up naturally 8/9 hours later and had energy all day. what happened to that...?

for supplements I take (ALL gluten-free) a multi with iron, D3 every day (my levels were borderline low), B12 once a week or so (used to every day till levels got super high), iron every few days (levels borderline low again), folic acid, and a calcium/magnesium/zinc tablet. I've been gluten free what, 3 months (it's in my sig i guess)? my antibodies, last time they were checked, were 157 or smth like that.

I wish you could give me some of your sleep as I'm the opposite. I have so many sleepless nights and absolutely cannot sleep during the day. I am always exhausted, even when I do sleep.

Try cutting out the bread, Chex, etc. and eat just whole foods to see if that helps.

Good luck!

I'm the opposite as well. I have gone three full nights without falling asleep so feel barely functional. I have far more sleepless nights than those that I do sleep. I sleep well about once every ten days (mostly due to chronic pain). It's a rough cycle!

Sorry to be of no help whatsoever. Just chimed in because we all have such varying problems with this!

I did just want to add that *part* of the problem was probably dehydration. I feel a little better from drinking a ton of water about an hour ago. Not 100%, but good enough to go get some yard work done.

Sorry about your sleepless nights. I used to struggle with insomnia a lot as a teen and I think a lot of my sleep problems were gluten-related. But I could always nap during the day for some reason. Eventually with sleep hygiene, rationing out my energy, and sleep medicine (in my case ambien for emergencies and low-dose elavil every night) I was able to control my sleep problems enough to graduate magna cum laude from university and stuff. And that was BEFORE my celiac diagnosis. After the diagnosis and start of the diet I did two sleep studies which found nothing because the diet really started helping right away in that regard...

anyway, just wanted to say that it took me years and years of my childhood to figure out, but I progressed to having the opposite problem somehow. :/ so there's... hope? haha, idk

I have the same problem. Can literally sleep 3 days straight. My sleep doc says I need 12 hrs (and even then I have fatigue). I have periodic leg movements. I did not even know. I sleep at most one hour then wake up but go back to sleep & don't know. It csm be relayed to restless legs or neurological disorders. He thought I had delayed sleep phase disorder & restless legs but then I had a test. The medicine for it is making me tired. So, not sure what tp tell u but I hope the sleep neuro will help.

You said something about cleaning a crumb filled kitchen. Maybe you need to have a gluten free household or at least get your house mates to be more careful with their gluten. You might be accidentally ingesting some. I think that would be more of a problem than the cereal.

I agree you need to get rid of the cross contamination. I have a post on my blo linked from my profile called going 100% gluten free that may help.

It's also possible something else is going on, especially if this is an ongoing thing. Have you talked to your dr or been tested for thyroid problems or iron deficiency?

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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

yes, all my bloodwork has come back normal consistently--for thyroid and iron. My iron was always on the low side of normal, but I started taking supplements and it got better.

I need to be more vigilant about washing my hands, I think, definitely. I can't have a gluten-free house, but we try really hard to eliminate CC when preparing food. I have my own cutting board and stirring spoons, we use mostly unscratched nonstick pans, we wash things in a dishwasher, I wipe up with paper towels, I have my own strainer, etc. etc. I dunno. Staying hydrated helped a lot at least. and I need to exercise more too I think. but still have tiredness.

I am tired throughout the day no matter how much I sleep. I just slept 12 hours and had some chex for lunch and I want to sleep more. If I drink coffee or soda, it doesn't really help me feel more awake. And when I take a nap, I'm ready to go back asleep as soon as I wake up. It's a vicious cycle. All my friends make fun of me that I'm always tired. It's not my fault!

I try very hard to be gluten free (2 1/2 yrs) but also have to avoid dairy, so have trouble sometimes figuring out what has caused what symptom. I do know that if I have accidentally eaten gluten I get bad joint pain for about a day and for that day and at least one more day I am exhausted. Incredibly body tired (not always sleeping tho). There has to be some connection. I know when I am "clean" I feel better than I have ever felt in my entire adult life and have WAY more energy.

I was diagnosed with celiac disease 10 years ago and I have been gluten free ever since. I also experience a lot of fatigue and sleepiness. About 6 years ago I began with deilbating fatigue. I would literally sleep for 18-20 hours a day. I had to be woken up to eat and drink it was horrible and the doctors did not know why. About Two years ago my fatigue/ sleepiness did begin to get better but I was still very sleepy all the time. I recently went to mayo clinic and I finally got a diagnosis. Idiopathic hypersonimia. basically it is excessive sleepiness during the day. Tests to find this are to wear an actiograph which is a watch that measures your sleep patterns, and night time sleep study, and a day time nap study. I hope you begin to feel better!

OK....we all agree that celiacs will make you bone tired...but what I want to know is,
are you getting enough fresh air? That will knock you out right there! is there enough circulation of fresh air in your home...and I'm NOT refering to the air conditioning!
Are you getting enough sunlight to prosses your vitamin D? What is the weather like where you live? Hot? muggy? cold and overcast?These conditions will just make you more tired on top of the celiacs! Also you need to eat more than ceriel and PB&J....theres probably half your problem right there!
Wheres the fruit and veggies? you can't just substitute one grain for another only...and your food sounds to procesed still! this is just my opinion.Sounds like your burning out and theres nothing GOOD and HEALTHY to refeul you!!!
I'd go with less processed...more natural...more sunlight( even if your just opening all the curtains and windows)and beleive it or not...a nice shower! not to hot (that will knock you out and zap your strenth), but nice(semi cool)...it's invigorating and gets the circulation going .A little stretching afterward...nothing to vigurous allways helps too! When your skin is clean you breath better AND feel better..a cool (NOT COLD) shower and a little strech will wake you up.Then go get a nice refreshing snak of cool sliced peaches or apples with maybe alittle honey drizzled over them !Don't forget a nice cold glass of WATER. Honey is a great energy booster and antioxident as well!!Try these things and see how you feel...it helps me!

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Cougie23Diagnosed 8/3/11Celiacs/casein sensitive/lactose intolerent

Favorite quotes- "I know you think you understand what you thought I said,But I'm not sure you realize that what you heard is not what I meant!!!"-anonyamous

"you can lead a donkey to the river...but if you want him to drink...you have to throw him in" -(21 yr.old son)

I recently went to mayo clinic and I finally got a diagnosis. Idiopathic hypersonimia. basically it is excessive sleepiness during the day. Tests to find this are to wear an actiograph which is a watch that measures your sleep patterns, and night time sleep study, and a day time nap study.

I can't stand it when doctors give a "diagnosis" like that. "Idiopathic" MEANS "with a cause we can't figure out" and "hypersomnia" MEANS "sleeping a lot". So basically you went to a doctor saying, "Hey, doc, I've been sleeping a lot and I don't know why," then paid the doctor quite a bit of money and went through a few tests to leave with a diagnosis that, in medicalese, very literally means "patient has been sleeping a lot and we don't know why either". They told you absolutely nothing new!

This is why it takes so much to convince me to go see a doctor. Several thousands of dollars of tests later and I leave with exactly the same information I had when I walked in.

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Not diagnosed yet. Running a four-week test started 09/20/11 to see if removing gluten helps me digest things. Lots of family members are sensitive to gluten, though, so it seems pretty likely.

I have the trouble of wanting to sleep 10+ hours a night especially as the days shorten. The only real thing that I have felt has made as didderence is to actually get outside and absorb the sunshine thru my skin. I think it has to do with a vit d deficency and the vit d from the su helping the body absorb nutrients to the rest of your body. Make a poiunt to get outside, even to sit each day and see if it makes difference for you.